In my work with a wide range of people, I've seen the difficulties that people suffer due invisible disabilities. One of those challenging conditions is Fetal Alcohol Spectrum Disorder (FASD). Individuals living with this disability often experience heartbreaking realities unless they are able to receive consistent and caring support and access to community and professional resources to assist them in their struggles of daily life.
As mentioned below, once young people reach the age of majority, there is a harsh transition to adulthood, where few services and supports exist to help those with FASD. Accessing resources through Community Living BC is extraordinarily difficult due to their criteria for accepting people.
Adult mental health services are also extremely limited in being able to offer the complex support that those living with FASD require, although the majority of these individuals have co-morbid conditions, such as depression and anxiety disorders.
Sadly, there has been little progress on the part of the BC government in resourcing a comprehensive plan for supporting the transition of young people to adulthood and support for adults with FASD. I wish government's would stop spending funds on writing feel-good reports and actually do something to resource community and professional services. If this support was available, so many people would benefit.
Fetal Alcohol Spectrum Disorder: Building on Strengths
A Provincial Plan for British Columbia 2008 - 2018
The Ministry of Children and
Family Development in collaboration with other provincial ministries,
and in consultation with families, service providers, and clinical
experts has developed a plan that focuses on six important objectives:
- British Columbians are aware of the risk of alcohol and substance use in pregnancy and of FASD as a lifelong disability.
- All women of childbearing age and their partners and support systems have access to early support and follow-up.
- All pregnant women and mothers experiencing substance use problems,
and their partners and support systems have access to focused
intervention and support.
- Children, youth and adults living with FASD have access to timely diagnosis and assessment.
- Children, youth and adults living with FASD and their families and
support networks have access to comprehensive and lifelong intervention
and support.
- Service systems are coherent, integrated and coordinated, and benefit from strong research and evaluation.
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By Keith Rozendal, Vancouver Sun
November 9, 2012.
“All of a sudden she was gone.
“Boom — no reaction.
Her arms and legs started shaking. I called the nurse in. Within the
next 10 minutes they were doing a spinal tap without any anesthetic,
nothing.’
Lydia Neufeld’s 13-year-old foster daughter had slipped
away like this seven or eight times before, but this was the first time
her doctors had seen it. They had no explanation.
Neufeld’s
daughter has fetal alcohol spectrum disorder (FASD). While she grew in
the womb, her birth mother drank alcohol. The substance penetrated the
placenta and attacked the growing girl, leaving parts of her brain
permanently shrunk, scrambled, or simply missing.
That prenatal
injury stranded the Richmond teen in a world of noise and confusion. She
suffers these spells — paralyzing panic attacks — whenever her brain
can’t keep up with stimulation and rapid changes in her environment.
Hundreds
of thousands of Canadians live with a wide range of physical and
psychological disabilities caused by prenatal alcohol exposure,
according to Health Canada estimates. They’re born with irreversible
damage to brain and body. The injuries slow their childhood development,
hold them back in school, create a chaotic adolescence and leave them
unable to lead independent adult lives.
Complex disabilities
Neufeld’s
daughter wrote a letter explaining her disability — and why ambulances
sometimes rushed her from school — to her classmates.
“Because my
biological mom was drinking alcohol during pregnancy with me, my brain
was injured and works differently than your brain,” she told them. “I
can’t learn as fast as you. Sometimes I need to hear things over and
over to remember, but sometimes I still forget. It’s not because I’m
trying not to remember. I really just can’t.” Her letter had an impact.
“The
teachers were just in tears after listening to that letter,” Neufeld
said. “And the kids started to understand what it’s like. It changed her
life in school.”
This year, she’s resuming a full-time schedule of classes, after years of partial days.
Her
doctors call the panic attacks she suffers a secondary disability
because they’re best understood as being rooted in her brain’s inability
to meet everyday thinking challenges.
As the teenager explains,
“it is very hard to do stuff in school because of all the people and
noise. My brain can’t handle so many things happening at the same time.
Sometimes I can get very scared and I feel like my heart is going to
burst out of my chest.”
More than 90 per cent of adolescents with
FASD develop one or more mental health issues, including depression,
attention deficit hyperactivity disorder, substance abuse or aggressive
behaviours. These secondary disabilities sometimes produce the only
visible signs the person struggles with FASD.
“The more complex
behaviours — acting out, tantrums, blaming, lying, stealing, all those
things — are because they’re having their disability,” said Cheryl
Penner, a counsellor for families with FASD at the Touchstone Family
Association in Richmond. “When your little person is taking a tantrum on
the floor, it’s not just that they want to be bad — they’re acting out a
frustration and anger they don’t know how to cope with.”
Unfortunately,
the secondary disabilities look a lot like misbehaviour. People’s
misunderstanding lead them to see only kids behaving badly — telling
lies, stealing, breaking rules, and not listening to their parent’s
discipline. The children get in trouble at school. Out in public, their
parents see a lot of disapproving looks.
“They’re being labelled
as naughty children, when in fact they are disabled children,” said
neuropsychologist Val McGinn. “People often look at these children and
think, ‘Gosh, they’re dreadful parents.’ In fact, it’s a parent trying
to do their best trying to manage a disabled child.”
Circle of support
When
Audrey Salahub learned her adopted son had FASD, she began to surround
her family with a supportive community. She educated herself and her
Fraser Valley neighbours about the disorder.
“I thought, if my son
were to ever survive in this world, he would need to be able to be in
communities that knew about FASD,” she said.
One night, that vision of a protective circle of caring and understanding people crystallized in her mind.
“I saw this baby nestled in the petals of a lotus. I thought, ‘Oh my gosh, that’s my son’,” she said.
“The
petals of the lotus circled him and cushioned him, protecting him so
that he could enjoy his life. I came to understand that this was about
the circle of support that we need to provide for our families and our
child. Each petal represents training and education and diagnosis and
all of those things we need. Also acceptance, understanding, compassion
and patience.”
The image became the logo of the Asante Centre, a
clinic providing diagnosis and social services for people with FASD,
which Salahub co-founded and where she now serves as executive director.
The
people and relationships in the life of a person with FASD have a big
influence on their success. Because the brain damage never resolves
itself, people with FASD rely upon a supportive community their whole
adult lives. Rather than independent living, they live lives of
interdependence. So do their parents.
Neufeld has come to rely
upon Penner, one of 69 provincial FASD key workers hired by the Ministry
of Children and Family Development to assist parents in raising
children with FASD. At one point, eight foster or adopted children with
special needs lived in Neufeld’s Richmond house. Her daughter, now 15
years old, lives with an 18-year-old brother and a 10-year-old sister
who also have an FASD.
The FASD key worker and parental support
program started in 2005. More than 50 social service agencies across the
province have contracted with the ministry to put key workers on staff.
Families can request the free help even before their child receives a
diagnosis. In a 2009 evaluation report, parents gushed with praise
for the program. Neufeld is one of many who developed a tight bond with
a key worker.
“If we didn’t have Cheryl Penner in the middle of our family, I don’t know what we would have done,” she said.
A personal touch
Penner
proved essential in helping Neufeld’s daughter avoid new panic attacks.
Together, the women created an innovative way to help the teen talk
about what triggered her attacks.
“She wasn’t able to verbalize
what she was worried about,” said Neufeld. “So I bought a bunch of small
little toys that would represent doctors, the ambulance, animals and
trees — any type of small toy she could play with in the sand and make a
picture. Then I would ask her what was happening and she would be able
to verbalize what she was feeling at the moment. She’d tell it like a
story.”
The solution emerged from the detailed understanding of
the girl’s specific disabilities and strengths, which was developed by
Penner, a core goal of the FASD key worker approach.
Neufeld’s daughter loves reading and is highly verbal. The sand play used these strengths to help her talk about her fears.
Building
on that storytelling gift, Penner then encouraged Neufeld’s daughter to
begin penning the letter she eventually read to her classmates.
The
letter supported another goal of the FASD key worker approach — to
create a network of caring adults and peers that can provide ongoing
support for the child when they are outside the family.
Key
workers support the Ministry of Education’s provincial outreach program,
helping public school teachers understand and accommodate their
students with FASD. In other formal and informal presentations, key
workers reach out to provide FASD education to all the important adults
in a child’s life.
“It is our job to try to make links,” said Sharon Lund, supervisor of the B.C. Children’s Foundation key worker program.
“Then
I have to hope that those links have gone to another person to support
that. We’re not really going to be staying in their life for a long
time. We need the individual, the parents, the caregivers, the foster
parents. Whatever their community is, we need them educated the same
ways because they are the ongoing support.”
Adult lives derailed
Unfortunately,
many young adults with FASD face a dramatic drop-off in social supports
when they turn 19. No longer considered minors, their access to the
provincial key worker program and many other children’s social services
end.
At the same time, most adult-oriented programs for the mentally handicapped remain closed to them.
Although
FASD hinders their ability to handle the demands of daily living, their
IQs scores tend to be near-normal, or fall just above the cutoffs that
qualify them for supports from Community Living British Columbia for
adults with developmental disabilities.
In response to their
plight, CLBC created the Personalized Supports Initiative in 2010.
Access to the program hinges on assessments of an individual’s ability
to care for themselves, rather than intelligence tests.
The
program also requires an FASD or autism diagnosis. If an adult meets
these tailored qualifications, a case worker can help them find housing
and work and can assist in running a household and many other needs.
Providing
for young adults with FASD is an issue that sparks a lot of passion
among families and FASD social service providers because the stakes are
high.
“We’ve seen many youth just fall off the rails completely at
that time,” said the Asante Centre’s Salahub. “They’ve lost that whole
child welfare system and they have nothing. If there isn’t that kind of
support system to help them manage some of the day-to-day things, they
get in trouble with the law or they become victims of extreme abuse.”
‘Hell for two years’
Lydia Neufeld has seen her 18-year-old adoptive son with FASD falter just as this adult cutoff looms.
Struggling with academics and discipline, Neufeld’s son began skipping classes in Grade 10.
He
stopped taking the medication controlling his attention problems and
got in trouble with the law. His disability interfered with his ability
to see the costs he paid for his misbehaviour, so he would get caught
and punished repeatedly.
“We’ve had hell for two years,” Neufeld said.
Her
son recently returned home from a five-month jail term and four months
of in-patient drug and alcohol rehab. With one year left to access
childhood services, he’s enrolled in a construction trades training
program.
With modest levels of supervision — somebody to check in
on him daily — Neufeld’s son might be able to work and live on his own.
However, that duty will fall to his family and friends in less than a
year.
Even with a confirmed FASD diagnosis, CLBC’s criteria for
the personalized supports initiative require a very low score on a
psychologist’s assessment of an applicant’s ability to take care of
themselves. Many who could benefit from a support worker — like
Neufeld’s son — are too high-functioning to qualify. Fewer than 150
adults with FASD have benefited from the $10-million program in the two
and a half years since it debuted, according to CLBC.
Neufeld’s solution is to surround her son with caring people who provide positive influences as long as they stay in his life.
She
called his classmates at the private school he had been ditching.
Fifteen of his old friends and teachers agreed to watch out for him.
They invite him out for basketball in the school gym and other
activities. While he’s with them, they help him navigate daily
appointments and abide by his curfew and the other conditions of his
probation.
She sees this as the last hope to steer her son clear
of a life on the streets, cycling in and out of jail. Despite the
extraordinary challenges, Neufeld and her husband want their children to
know they’ll never waver in their care and concern. “We say, ‘Always
and forever, we will love you no matter what, but we don’t like the
choices that you are making. We still love you in spite of those,’”
Neufeld said. “They really crave that, to know they have a place go when
they need it. We’re the only ones in the world that will be there for
them. We never give up hope.”
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